When I looked it up, I found that the song is "Last Dollar (Fly Away)" sung by Tim McGraw ("Let It Go" Album).It's neat to hear Frank going about singing a song. He's a happy boy and the way he sings this brings the joy to our ears. :D

Tuesday, November 25, 2008

We started Frank on Sulfa, a very old sulfur based antibiotic. We continue to treat the wound topically three times per day, covering it with Bactroban.

This photo has NOTHING to do with this post! I just thought you might like to see the boys with their friends on our trip a week ago (or was it two?) to Salt Lake City. They had a great time playing in a field and with the drainage pipe.

This report will mean more to some of you than most, but I have so many nurses in my Circle of Life, that I thought you might just like to peek at the details...

So. I actually wish I understood more of what this report is saying, but I do understand that Frank has a Superbug, and the Arytomycin we've been giving him has likely been feeding the bug rather than killing it. :P

Two weeks (or so) on the new Sulfa and then a follow up. Surgery is pretty much a definite, once we clear up this infection.

We are blessed that he remains strong and healthy and feeling well... just the site of the infection that we are trying to clear. Even the site feels good (unless we're cleaning it, then it's uncomfortable for him).

Frank has been having me tell him stories about his previous surgeries. He also likes finding his previous PICC Line scars (one on each arm). I think it helps him to know that he survived all this before... and he doesn't even remember it!

Last night when I told him he had a "Superbug" and he would need more medicine before surgery, he said "Well, that's a good thing!... I can take medicine and wait longer to have my surgery." I LOVED his happy attitude toward the fact that we'd made some progress!!!

At 4:15pm yesterday, the final results of Frank's lab-work came in. He has an Unidentified Staph Infection which is multi-drug resistant (ie: it is resistant to MANY common antibiotics). The local doctor isn't "blowing me off", but he's not trained in this and wants us to see an Infectious Disease Specialist.

I did call back and tell the nurse that I WILL travel for to see the Specialist, but that it is Incovienent, Expensive, and (I feel) Unnecessary. I just don't see the need to drive Frank three hours just for the doctor to look at the lab report, reveiw the CaT Scan, confirm with other doctors that there is an infection, and then just shake my hand and glance at Frank.

So, we are waiting to hear when and where (phone or in person) that appointment will be.

Thursday, November 20, 2008

Wait a minute! I don't think I've ever told you about the Group I created.

Last November I started inviting Mom's with young kids to meet each week. The idea was to give Mom's a time to craft and visit while the kiddos played. We wound up with three Mom's meeting all Winter and Spring. Over the Summer, we were meeting at Parks and had plenty of room for the kids to run and play, and the group started to grow.

As Fall approached, I realized our group had outgrown most of our homes. I had to look for (and found) a bigger (free) place for us to meet! {Thanks to the free meeting rooms at our Public Library!!!}

We currently have 15 mom's on our email list, and on any given Friday, we'll have 3-8 Mom's, plus all their kiddos. Tomorrow, we're expecting THREE new Mom's to come.

I'm very proud of the way this group is going. It's relaxed and casual and just what we all need at the end of our week!

Getting back to the original heart of the group... a time for Mom's to craft... some of the ladies were asking about Embroidery. I said it "was easy" and "I could teach" them. I've gathered supplies to put together a few kits, and tomorrow, I'll start them out.

We're going to trace their kids' hands and then stitch them on Flour Sack Towels. Very simple, but fun. They can keep them or give them as gifts. If there is more interest, I'll keep the lessons and projects going.

I feel a little unprepared because I don't have any written materials to share with them. I've been looking for a pamphlet or leaflet, but haven't found anything. I'd thought I'd put together something myself (from online resources) but didn't get around to it. So. Tomorrow, I'll go with materials in hand and knowledge in head and let the rest work itself out!

Wednesday, November 19, 2008

This morning the site swelled back up. I took him to the local clinic. I cleaned the wound and opened it back up. The Lab Tech delicately took a small sample while saying "we don't do this, the doctor does"; then refused to give me any more cotton swabs for me to finish cleaning the site, saying and "we don't have any Q-Tips!" Let's just hope this sample gets properly cultured so we know what we're dealing with!

Frank is going back on the same oral antibiotic that we used three weeks ago. I insisted on only a six day course though because in five we should have results from the culture, at which point he'll likely change medicines.

I told the doctor my expectation was "that Frank would have a PICC Line in next week and ... surgery before Christmas." The Doctor said this was a realistic expectation and time-line.

Here's my question for you... do I go back to the original surgeons, and "my home" in Phoenix for this surgery or do I find and use a new doctor closer to home (in Salt Lake City)?

Either way the doctor in SLC would have to do the follow-up, post-operative care.

I have support (family & friends) in both cities.

I trust the Phoenix doctor's implicitly.

Frank's Dad is closer to SLC.

Frank could return to his own home and bed and toys sooner here in SLC.

In Phoenix, Jack would be closer to me.

In SLC, Jack would be in Wyoming.I have only been away from Jack twice at night (he's almost four).Jack has never been in day-care or pre-school.

Jack doesn't "need" me much, but I have a HARD time being seperated from him (or Frank).

The surgeon doing follow-up care understands the case better if he also performed the surgery.

I'm having a very hard time separating emotion from this. What would you do?

Last week we discovered that the sample collected from Frank's wound had been lost. Since then, we cleaned out the wound through Saturday, but then it was looking better and better... just a wound with a scab healing. Today, it's a little red and swollen... I'll keep a close eye on it. If it is reinfected, I'll trot Frank over for a collection at our local Medical Center (where an order is waiting on file.)

After looking at the CaT Scan again last week (with a second doctor) we noted that one of the stainless steel wires (on the left) looks to be encased in bone... which was the original plan. The other wire, looks like it has untwisted and is still above the bone. It actually looks (to me) like a staple that has been pulled out of a piece of paper... you know, how one side of the staple is raised up a little. That's kind of what it looks like is going on with Frank's "hardware". Knowing this, that a piece of metal rubbing on tissue is (of course) going to irritate the area, I understand that the only solution will be to remove that piece of the wire.

It was also interesting to learn that "hardware" can infect DECADES after a surgery, and that after removing it, the area usually heals quickly and without incident.

All-in-all, healed or more procedures being needed, I am SO MUCH calmer about it all. I know there's little I could have done to prevent this and that whatever is going on is treatable.

Friday, November 14, 2008

Jack has been practicing every week for two months to be in a Nutcracker Performance. Now, he's practicing a few times a week. The ballet will have five performances, plus the two dress rehearsals. I thought I'd mention them now, in case you might like to come and see him.

Performances:

Wednesday 3 December 2008Friday 5 December 2008Saturday 6 December 2008Friday 12 December 2008Saturday 13 December 2008

Dress Rehearsals:

Monday 1 December 2008Tuesday 2 December 2008

So. If you'd like to watch Jack as a Soldier in the Nutcracker, in his On-Stage Debut, please mark your calendars now!

Thursday, November 13, 2008

So. An interesting thing about the written word is that you have to express emotion through it, without the use of volume and animation and tone. You could just say "I feel ____." but I think writing is so much more powerful if you can help the reader to FEEL what you FEEL. I don't know if I can do this today, but I'll give it a shot.

Monday I was suppose to hear back from the Doctor in Salt Lake City about Frank's cultures. I didn't. I called them. There were no results in the computer. Tuesday I never heard from them and forgot to call myself. Yesterday, there were still no results in the computer, so I had to ask if we could contact the lab to check on the status. I was given a phone number. I spoke to a very helpful Microbiology Lab Tech, Andrew. He could see Frank's name in the computer, and NO RECORD of an Lab Work. Andrew offered to call the ENT Clinic and called me back.

"I don't have very good news" Andrew said. The doctor remembers collecting the sample. The nurses remember taking it down. And then nothing. Nada. So, it's been lost (physically or by misspelling in the computer) or damaged. No matter what, we probably won't recover that information.

Frank's wound looked and felt better on Sunday and Monday, but Tuesday, it started looking and feeling worse again. Presently, there is no infection coming out... which is a good thing for healing, but a bad one for answering questions.

The nurse and doctor never thought to follow up or bothered to call me without my first contacting them and pushing the issue. The doctors (WY ENT and SLC ENT) were both very kind to speak with me on the phone (or in person) yesterday, but I had to make the calls and leave messages including the phrase "please have the doctor call without me having to BADGER them!"

Both doctors thought we could "empirically" put Frank back on antibiotics. Then they switched and said I had a good idea to wait for any more infection to turn up. So. That's what we'll do. Keep cleaning the wound regularly and IF more infection starts to come out, I'll take him right over to our local clinic's lab, where an order is waiting to collect a sample and test it.

We're six weeks into this and still don't have any conclusive answers on what's going on. We'll probably never know what exactly caused all this.

How would you react?

I spent seven hours yesterday with a passionately raised voice and or crying.

I feel so frustrated, worn out, worried, and just spent.

Today we're "logging out and powering off" (computer and phone). I'm going to spend the day with the boys, cuddling, reading, watching movies, and playing. No school or errands or "have-to's". We're going to play "hookie" and Ditch Life today.

Sunday, November 09, 2008

Ever since I met him, he takes scraps of paper and folds them to a point, or grabs a business card and swipes it between his snaggle tooth and other teeth. He does this after he eats - every time.

In his whole life (46 years), Tom has had four TOTAL cavities and fillings, all of them minor. While we were in California we went to the dentist for our teeth cleanings. Tom had something like EIGHT new cavities... including one in his snaggle tooth. Since the Tortuous-Two-Dentist-Four-Hour-Filling on his precious (he got it when his lower jaw was broken at a bar on his 21st birthday - ah... the memories!) snaggle tooth, no paper will fit in between the teeth. He now needs to use dental floss.

After dinner tonight. Tom ask Jack to go get him some floss... Jack looked like a deer in the headlights, because he didn't know what or where the floss was. Fast as a Flash, Frank ran upstairs and returned with a little piece of floss for Tom... a VERY little piece.

From across the room, I guessed it was 7 or 6 inches, Tom said 5. I measured. I was right. It was 6 5/8".

I LOVE it when I can quantify how right I am!!!

As Tom said "Waste not, want not."

And if you're wondering, 6 5/8" of dental floss was JUST enough for Tom to wrap around his fingers and swipe through the snaggle tooth. :D

I've been cleaning Frank's wound twice a day (three times just hasn't been happening).

Yesterday morning, we had a hard little piece of infection come out, then last night it started to "look different". This morning it looks very different... and MUCH BETTER! The red-pink area is smaller. There is no swelling. And when I soaked the scab off, there was just a small dark red indention, not an open "hole" with pus coming out. It looked like when a scab gets pulled off, just a dot of skin healing. Also, the past several days, when the scab came off, and I'd put a dot of peroxide on, Frank would scream because it hurt. Today, he didn't move. I ask if he could feel it and he said "No!"

I'm remembering that my Grandad use to tell me about a wound he had that a nurse would soak off his scab daily, to avoid scarring. The specialist in Salt Lake City mentioned that Frank would have a scar from this wound. I wonder... if I keep soaking it with peroxide, then putting the prescription antibiotic ointment on it... what are the chances of reducing the potential scar on his face? What about a homeopathic approach and Lavender Essential Oil? Would putting that on instead of the prescription ointment prevent scaring?

I'm so glad that I feel like all I have to worry about is the scar and not surgery or other problems. It just looks THAT MUCH better!!!

Saturday, November 08, 2008

In the past I have been an Independent Consultant for The Pampered Chef. After many requests from friends and family, I'm hosting a Pampered Chef Party! Since my friends in Blogland can't come over for the Open House today, I'm hosting a Virtual Show.

The November Special is 20% off Unglazed Stoneware!!! This is just in time for Holiday Cooking! You can order as many cookie sheets, bread pans, muffin pans, fluted stones, bar pans, and pizza stones as you want... all at 20% off!

If you REALLY want to go crazy, you could host a show of your own and get 60% of a couple of stones!!!

Thursday, November 06, 2008

We now know that we don't know what the Source of Frank's infection is.

The contrasted CaT Scan told us that the infection is not in the sinus cavity or intracranial... these are VERY good things. It could still be in the bone or tissue, it could also be Frank's body rejecting the Stainless Steel Wires that were put in five years ago. The Pediatric ENT was leaning strongly toward the posiblity of Frank's body rejecting the metal wires.

A culture was done on the infection. We'll have the results Monday. We'll probably change his antibiotic once it's known what type of infection this is. The new antibiotic could be oral or intreveneous... in which case the PICC line could be installed here in our town.

We're not out of the woods yet. We could still be facing surgery in two to six weeks.

In the meantime, I have to clean his wound out three times a day. Frank is very patient. He gets the supplies out and is curious about the cleaning process.

After the wound opened up, it leaked for about 18 hours. Currently, it's red and nearly flat. The local medical facilities in Wyoming couldn't perform the necessary imaging, so, we have appointments this morning at the University of Utah Medical Center and Primary Children's Center to have a 3D CaT Scan and meet with the Pediatric Otolaryngologist (ENT).

Frank and I stayed the night at a friend's in Salt Lake City to make this morning easier, and another friend has Jack with her (who also happens to be on a trip from Wyoming to SLC!)

Tuesday, November 04, 2008

Ironically, on this election day, I'm more concerned about a spider bite on my son's dorsum (bridge of his nose) than I am about whether my candidates won or not. This is pretty wild to me because I was up all night at the last presidential election, giving myself a migraine, worrying about the results of the election. This year, I've been up for the past two hours cropping photos of Frank for the past five weeks.

Anyone who personally knows us, knows that on Frank's first birthday, in 2003, we discovered a birth-defect that required surgeries and many years of treatment for Frank. The treatments went incredibly well and after five years we were given a "clean bill of health." Regrettably, there is still sensitivity at the site where a donor bone was put in... at the bridge of Frank's nose. The bridge of his nose, and half of his right eye socket came from the femur of an unknown cadaver. Whenever Frank gets bumped or bonked at the site, there is swelling and often redness. We understand that this is part of the "assimilation process" for his "bone matrix".

Unfortunately, on our trip to California, Frank woke up on his 6th birthday with a spider bite dead-on the site of his donor bone. We've been watching and waiting. After 2 1/2 weeks I took him to a doctor. At four weeks, he was put on an antibiotic. Now, he's got a nice crater from the infection coming out. It's gross. It's scary. I don't like it.

If you're interested, here is the information I've been compiling for the doctors, followed by some yucky pictures.

Wednesday 1 October 2008• Wakes up with small pink-red area on right side of dorsum of nose.• Looks like a spider bite.• Progresses through “normal” bite look:o Redder, then pinker;o Bigger, then smaller.o Light pink with scaly skin.

Thursday 15 October 2008• Looks like a new bite at the exact same spot.o Site swells back up.o Entire dorsum swells into both eye orbits.o Red.

Saturday 17 October 2008• Visit PA at Medical Clinic.o Could be body didn’t get rid of all poison first time, so, second reaction.

Monday 27 October 2008• Red again.• Swollen at site of bite.• Black dot right in center.

Tuesday 28 October 2008• Black dot still there.• At lunch, Frank wipes the area, and the black dot is gone. Followed by:o Yellow pus.o Swelling down.o Blood.• Cleaned with peroxide.• Covered with Neosporin and bandage for the afternoon.o Bandage removed at bedtime… skin irritated from adhesive.o Site looks flatted, but with little dark spots.o Light red.

Tuesday 4 November 2008• Red and swollen in morning.• Swollen more in evening.• Dad touches it and milky-white pus mixed with blood comes out.o About 1/8” cavity present.o We push around the area and much pus comes out.o While cleaning (with peroxide) the area begins to swell again.o Covered with a clean, dry bandage.

By the way, the risk here is to the sensitive new bone... an infection in it could mean several more surgeries... to remove infected bone, then wait for months, then put in new bone. It could be very bad. Very long. Very expensive. Very traumatic (for me!)

Today, before it started leaking, I'd already called the local ENT/Facial Plastic Surgeon (whom he saw last week) to schedule a CaT Scan. I never heard back. Tomorrow, it will be my mission to contact the doctor and schedule (if not have) the scan... we need to find out if this infection is in Frank's bone. :(

Monday, November 03, 2008

It's 40 degrees Fahrenheit out, and I'm walking around - COMFORTABLY - in just a VERY thin, long sleeve t-shirt and a medium-weight fleece vest. I also have on jeans and shoes and underclothes... but no coat. No mittens. No gloves. No scarf. NO HAT! I'm comfortable!

Who woulda thunk?!?!?

I'm happy to be aclimating to the cold a little faster with this move than I have in previous moves.

I'm also happy that it's warmer than last year, our highs have been 60-70 for several weeks now. October was about 30 degrees warmer (so it seems to me).

About Me

My mental ramblings, pattern design progress (wait a minute! I'm "designing patterns"? I forgot I was suppose to be doing that!!!), newer Wyoming Life, and other assorted comments as they come screaming downstream from my brain to my fingers to the keyboard! You never know what you're gonna get.